Don't Feed the Fear: Food Allergy Anxiety & Trauma

Living Out Loud While Invisibly Allergic with Zoe Slaughter

• Amanda Whitehouse • Season 6 • Episode 46

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In this episode I am joined by Zoë Slaughter, the influencer behind the Invisibly Allergic blog and social media accounts and author of the upcoming book by the same name. Zoë shares candidly about her airborne and contact reactivity, her experience using the new nasal epinephrine Neffy, and how she has navigated a safe work place. We also talk about what it means to advocate for change in a world where food allergies are still misunderstood, and how storytelling can open doors for awareness, empathy, and progress.

https://invisiblyallergic.com/

https://www.fda.gov/safety/medical-product-safety-information/medwatch-forms-fda-safety-reporting


Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com

Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com



Zoe Slaughter, Invisibly Allergic:

here's the situation. I'm alone. I'm having a allergic reaction. I told them, I've never used this Neffy before. I have a really intense burning in my nose, inside of my nostril. It feels burnt, like, I got a jalapeno up my nose basically., Is this normal? And he was like, I have heard that it's a side effect. That burning and nasal discomfort, is possible. I showed him how I administered it, and he was like, you did it right.'Cause I was nervous that I may have done it incorrectly and caused this pain. And so, that is the, the story I guess, of me using the Neffy. But I didn't have to use a second, uh, Neffy or EpiPen. Um, and it really took care of the symptoms like immediately.

Speaker:

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..

Today I am joined by Zoe Slaughter, the founder of the Blog and Social Media Accounts Invisibly Allergic, and the author of The Soon to Be Released memoir of the Same Name Zoe talks in her book and today on our episode about her experience with severe food allergies. She is such a positive and uplifting advocate and member of the food allergy community who encourages and supports and lifts up all of the efforts that are going on. So today we talk about her advocacy work and how sharing personal stories is a really important part of fueling the meaningful changes that we all want to see.

Amanda Whitehouse, PhD:

Thank you so much for being here to talk. I'm so excited to get to know you better could you give, all my listeners a little bit of background about who you are and what you have been up to in the allergy world.

Zoe Slaughter, Invisibly Allergic:

Oh yeah. So I'm Zoe Slaughterer. I live in Louisville, Kentucky, and I have a peanut allergy. Um, I say my peanut allergy is airborne and cross contact reactive because it has, uh, gotten to that level. It. It's not always been my whole life, but, um, it's kind of progressively gotten worse, the more anaphylactic reactions that I've experienced. Once I started learning about food allergies myself in my twenties, um, I learned about the labeling laws in the United States and kind of the lack of labeling laws around. allergies specifically. And so I started my blog in 2017 called Invisibly Allergic. And really it's always been the same kind of message as when I started, is just to, uh, connect with others with allergies who feel alone in their experience, feel confused why they're having reactions and, uh, maybe don't know the labeling laws. And so, yeah, that's, that's why I started it. And now I'm on social media because that's the trajectory that things have taken

Amanda Whitehouse, PhD:

It's the only way to do it. Right. I'm finding reluctantly I'm finding that out myself, but, but I get to meet nice people like you, so it's worth it.

Zoe Slaughter, Invisibly Allergic:

Yes,

Amanda Whitehouse, PhD:

there's a piece of that that I would love. We didn't really plan to talk about it, but I. I, I would love to talk about this airborne piece because I, it, it's rare. I don't ever wanna on the show, fearmonger and scare people. And obviously I've had a lot of doctors on who say it's very rare. It's extremely unlikely. And I don't talk about it a lot, but I have a kiddo who has had airborne reactions to peanuts too. I don't, again, I don't wanna terrify people, but I also think, I don't want people to feel gaslit. So I think it's important to have someone like you explain. It may be. Very uncommon, but it can be real. So if you have had that happen, your experience is valid. It might be helpful for them to hear what, how you have gotten to that point and what you've noticed.

Zoe Slaughter, Invisibly Allergic:

100% because the gaslit thing is definitely like some, a barrier that I've had to get over, um, because I was told by many allergists, you know, it's super unusual. It's really rare, uh, which, you know, could be true. And then my experience can also be true. Um, so it's interesting that you're. You know, a child has also had airborne reactions and even at their age you've noticed it because I really suppressed that, um, side of my allergy and thought, you know, it's all in my head throughout high school, uh, you know, throughout, even earlier than that, middle school is kind of as far back as I can remember having reactions when I was just in an environment with my allergen present and I thought, you know, this. It shouldn't be happening. So it's probably anxiety, and that's how I navigated it for a long time. And then I had, um, a reaction that, I know we'll get to talking about this, but I kind of spell it out in my book and I have it on my blog too. Um, I really feel like it was a pivotal moment for me where I. Felt empowered, and I don't really find my airborne allergy like so scary to tell you the truth. But now that I know that it's a real thing, I feel more empowered by it because I feel like, okay, this is actually happening and I can respond to it. Whereas before I was like, do I take antihistamines? Do I, you know, what do I do in my, is it in my head?

Amanda Whitehouse, PhD:

Right, and maybe make a dangerous choice because you are dismissing. What's a reaction that needs to be treated?

Zoe Slaughter, Invisibly Allergic:

Exactly. And so yeah, I had a experience where I walked into a space, I hadn't touched anything. The door was propped open. So I walked in, um, immediately felt like I was hit with kind of the feeling of a reaction coming on. Um, I kind of tried to push it down and say, you know, that's weird, but obviously. No one's around. Nothing's around. It's an empty space. Um, but it turns out a couple hours prior, there was an event in that space where there were peanut butter, snickers and candy bars on every table. And apparently it was like mounds of them, you know, the center of each table. Like, um, just plenty of those in the space, which I had no evidence of at all. The tables and chairs and everything were cleared. And so after that happened and my lips started swelling, I started getting hives. Um, I was. Just told myself like, this has happened so many times where you've written it off and you are not telling yourself this anymore. You know, even if you don't find anyone to validate the experience, like I know what's happening now. And my mom was also very supportive in that same mindset where she would say, trust your body. Like, so that's what I've been doing ever since.

Amanda Whitehouse, PhD:

Yeah. Well, I'm glad your mom is supportive and helping you sort through and connect with your gut on this, because you touched on it, a lot of people would say, oh, that's anxiety. And obviously yes, anxiety can cause very real physical symptoms, but you knew the difference.

Zoe Slaughter, Invisibly Allergic:

Yeah, and I, I have anxiety in how generalized, um, as an adult, and I'm sure I probably had it as a kid too, but they definitely, I can see the differences and feel the differences in my body between the two. And so, um, yeah, I definitely advocate for people to tune into their bodies and just feel what they're feeling and try to validate themselves as much as they can.

Amanda Whitehouse, PhD:

Would you mind saying more about how you do that? Obviously the anxiety is common among people. Managing what you are and to hear it from someone who has learned how to do it for yourself is probably really powerful.

Zoe Slaughter, Invisibly Allergic:

Yeah. Yeah. So for me, typically I start with like my heart and I kind of feel like is my heart racing? of do a body scan, like a simple body scan of like, how am I feeling in my body right now? Am I anxious or does this feel more like I'm having a sensation in my body? I can tune into, that's maybe a reaction because I know it's confusing for people who, you know, have children with allergies and don't have allergies themselves. But for me it's always been pretty clear the difference. Um, it's almost like, you know, I've breathed something in and I feel like I can feel that there's a part of me, um, or a part of something that's entered my body that isn't me like a foreign. or something. So it's been easy for me to differentiate even before I think I had the words to, but definitely I usually start with like, how many heartbeats, you know, am I having, am I having, um, shortness of breath, like where I'm feeling panicked, like shallow breathing. Um, just those signs where when I am having more anxiety, those are the typical symptoms that I experience. Usually they don't come together the same. Like if I'm having a reaction, I'm usually fairly calm actually in my body, um, where I'm like tuned into like, okay, what do I need to do? I know the steps. Here I go.

Amanda Whitehouse, PhD:

Right.

Zoe Slaughter, Invisibly Allergic:

Not like panic, you know? Um, so,

Amanda Whitehouse, PhD:

Right. Frazzled. So

Zoe Slaughter, Invisibly Allergic:

mm-hmm.

Amanda Whitehouse, PhD:

you for sharing that because I think especially once you came up for, with some words to describe it to yourself, now you have like that test to talk yourself through it if and when it starts happening, that that is, in your words, your definition connected with your physical experience.

Zoe Slaughter, Invisibly Allergic:

Mm-hmm. Yeah. Yeah. You're welcome. Thanks for asking.

Amanda Whitehouse, PhD:

awesome. Yeah. So you had this response and then did you do some detective work afterward? Is that how you found out about the, like peanut allergy nightmare of mounds of Snickers on the, I mean, that just sounds horrifying.

Zoe Slaughter, Invisibly Allergic:

Yeah. It was at an internship that I was going to regularly when I was in college and I, when I was having the experience, I was like, you know what? I'm gonna text my friend who I know. I just like happened to remember when I was in the space and kind of trying to figure out am I having a reaction or am I not? I walked outside and I texted my friend who had done an event there earlier and I asked her, you know, was there food at this event? And I kind of expected like to not get a response or, um, to her, you know, be confused why I was asking, or something like that. Because I just kind of did a cold text of like, Hey, the event you were at earlier was there food? And within seconds I got a text back from her in all caps, which is very unusual saying, get out of the space. There was. So many peanut products. And I was like, what? You know, it was the last thing I was expecting her to say. I thought she was gonna be like, no, I'm not. I don't know. I don't remember. You know, something like that. But, um, yeah, so it just goes to show like, I mean, I, I had no idea what happened in the space. I knew there was like a book reading or something to do with, um, like she worked at a book publisher, so I knew that there was some kind of event that happened, but that was all I knew.

Amanda Whitehouse, PhD:

Wow. Why would you pile Snickers all over a table at an event? Why is that necessary? You know

Zoe Slaughter, Invisibly Allergic:

I know, I know. Apparently it was like a teen kind of event, like a young adult, and I'm like even more of a reason

Amanda Whitehouse, PhD:

what?

Zoe Slaughter, Invisibly Allergic:

have, you know, these kinds of foods and snacks, but

Amanda Whitehouse, PhD:

Yeah. Because

Zoe Slaughter, Invisibly Allergic:

it

Amanda Whitehouse, PhD:

80% of those people are gonna have a food allergy, right?

Zoe Slaughter, Invisibly Allergic:

Right. Exactly.

Amanda Whitehouse, PhD:

Yeah, well, more awareness, which is obviously a lot of what you've been doing. So do you wanna talk about your book

Zoe Slaughter, Invisibly Allergic:

sure. Yeah. So I've been working on a nonfiction around food allergy awareness since 2019, and it's taken the form of many different things. Originally it was all kind of memoir, uh, style, where it was personal to me, personal stories. Then I kind of felt like, I don't know if I wanna share all of this. Will people wanna read it? Um, I kind of had a little bit of imposter syndrome where I was thinking like, who am I to say, you know, all of these things. Um, so then I went the other direction and I went all statistics, facts, um, to try to keep it just. Neutral. Like I wanted it to have no bias and just be a, a read. And so I wrote it that way and I was like, this is so dry, this is so boring. I was like, I have to merge the two. So now I have this hybrid version that feels really like me and exactly what I kind of intended in the beginning. Um, and now, you know, here we are, like the middle of 2025, the whole premise and heart of. My book is just for people who have food allergies themselves, who are parents of people with food allergies, or even just in the social circles or honestly someone just curious to learn more about food allergies. They could pick it up and read it and find it, you know, applicable to their situation. So I wanted to make a book that I would've appreciated when I was like a teen. So it's written for teens and above.

Amanda Whitehouse, PhD:

Yeah, and I will say there's such a need for this. In this space because books like that are such a different read than the important statistics and facts that we need to know, but we, we need to be seen and heard and understand from your perspective what it's like to live with it.

Zoe Slaughter, Invisibly Allergic:

Yeah. Yeah, and it was very healing to write, honestly, like initially, I kind of like my blog. I started this like, is there anyone else out there? You know, like kind of writing and feeling like, wow, if, even if it only helps a couple people, that's. Great. And it's helped me just through, you know, putting into words and kind of that journey, um, of like self-reflection. Um, but now, yeah, it's morphed into this book that I'm really proud of. Accessibility is huge to me, so I don't want, um, payment to be a barrier. So, um, that requires a specific ISPN. So there's all these things I'm learning since this isn't the space that I'm in professionally. So.

Amanda Whitehouse, PhD:

Right. Right. So it, yeah, it's a big learning curve. But people want more voices in the space. They want stories to be told. So I'm so excited for you.

Zoe Slaughter, Invisibly Allergic:

Thank you.

Amanda Whitehouse, PhD:

Yeah.

Zoe Slaughter, Invisibly Allergic:

for bringing it up.

Amanda Whitehouse, PhD:

Of course. We'll say it now while we're on the topic. You're on social media, as invisibly allergic, right?

Zoe Slaughter, Invisibly Allergic:

Yes, that's right. And um, my book title will be Invisibly Allergic. Yep. It's

Amanda Whitehouse, PhD:

there.

Zoe Slaughter, Invisibly Allergic:

uh, link and bio on my social media. It's on my website. So, yeah, luckily I've been able to, uh, keep all of my, you know, names consistent. It's always just invisibly allergic, um, on my website, on Facebook, Instagram, all of it. TikTok.

Amanda Whitehouse, PhD:

Awesome. You and I got in contact and you know, I had heard that you had had this reaction. And used your Neffy. I was like, oh my gosh, will you please come and talk about it? Because everyone is so excited and yet confused and scared about their nephew, and I think they need to hear from someone who has used it. Do you mind sharing that story for everybody?

Zoe Slaughter, Invisibly Allergic:

Yeah, absolutely. I'm more than happy to. In fact, I shared it with my own allergist as well because they were like, you're our first patient who's used Neffy. So I feel like, um, yeah, a use case

Amanda Whitehouse, PhD:

Guinea pig.

Zoe Slaughter, Invisibly Allergic:

like, yes, the Guinea pig. Um, so yeah, I. I was really excited for and I still am really excited about Neffy the new, you know, FDA, approved nasal spray, epinephrine. Um, and I'd gone to a conference in November of 2024 where I actually got to talk to a Neffy rep and it made me feel a lot more comfortable with the idea of just the device, you know, how it worked. I learned about the temperature, um, being a bit more forgiving compared to the injectable epinephrine in terms of. You know, a hot day or things like that. So I was like, you know what, I'm gonna see if my insurance covers it once it's out. And um, actually my insurance, luckily did cover it. I paid$70 for it. Um, so it was a larger copay than, um, I have been used to, I guess, in the past. But I felt like I wanna give it a go. Um, so I did get the, um. Nasal spray. And then I carried my Auvi Q injectors with me as well. And so I went to Canada, um, for a food allergy retreat. Actually, um, shout out to Amanda Orlando., She's great. So I went to her food allergy retreat that she had in Toronto and on my drive back, um, I stopped in Columbus, Ohio and I had a really like, regimented idea of where I was going to eat if I was alone and traveling. I only wanted to go to chains that I'd been to previously and gone to, you know, a lot. So, like I went to a Blaze pizza. Um, and this is a. that has chains all over. Um, and they have their allergen menu disclosed online and it's really easy just to see like what allergens they use and they're very transparent around that. Um. So I went to this new Blaze Pizza that was in Columbus, Ohio, new to me. Um, and I ordered my usual pizza. And as I was eating it, my last piece of it, um, I had the feeling that I'm kind of talking about, um, where it just kind of came over me. I, I knew I was having a reaction and I knew it was to peanut. Like I just, in my body, I know those sensations and so I. Was like, you know what? I have my Neffy on me. I'm gonna use my Neffy instead of using my Avi QI have pants on. I, I always have a bit of a fear around will it go through jeans? Like they're like the Levi's, like thick denim. Like, yeah. So I was like, I'm gonna do it. I'm gonna use the, the Neffy. And so, um, I injected it or I it into my right nostril and, um. Immediately felt relief. And, um, I was on the phone with my husband. I, he told me there's an urgent care, like diagonal from where you're at. And so I made the decision to walk to the urgent care. Um, I felt really lucky in the moment that I was so close. Um, I did talk to the staff at the restaurant about what happened and they, they were like, do you think you have a, a dairy allergy now? You know? And I was like, no, I have a feeling it's either from the plant where the cheese came from or. Something got contaminated at some stage. They were really kind, they looked through the binder, reassured me, nothing had changed. So it wasn't like I got, you know, peanuts on my pizza, But maybe they will do some additional training or something like that in case someone was eating while they were preparing the ingredients the day before or something like that. That's where we, we ended and parted ways and I said, I'm gonna walk to the urgent

Amanda Whitehouse, PhD:

Yes, we can talk about this later, right?

Zoe Slaughter, Invisibly Allergic:

Yes, exactly. It was kind of like, here's the situation. I'm alone. I'm having a allergic reaction. But also I'm not accusing you, but I do want you to know in case I, you know, go unconscious, um, that I'm here by myself, so. It was a whirlwind, but I walked to the urgent care. It was so close. Um, and there was no one in there. And I explained to the person, um, what I had done. I showed them, my Neffy, confirmed with me. You know, I told them, I've never used this Neffy before. Have you heard of it? And they, I was so surprised. They were like, yep, we've, we've heard of the ne um, because I thought they were gonna be like, you just use what

Amanda Whitehouse, PhD:

Right. Where's your pen? That's the only thing that exists, right?

Zoe Slaughter, Invisibly Allergic:

Exactly. So, uh, that made me feel reassured too, that they were like, really current on what's going on. So they were like, yep, okay, you use that. And I told them, you know, I have a really intense burning in my nose, um, inside of my nostril. It feels burnt, like, um. Just, I, like, I got a jalapeno up my nose basically.

Amanda Whitehouse, PhD:

Ouch.

Zoe Slaughter, Invisibly Allergic:

and so I told him, you know, is this normal? And he was like, I have heard that it's a side effect. Um, that burning and nasal discomfort, you know, as a general term, um, is possible. And he looked at how I administered it. I showed him how I administered it, and he was like, you did it right. He was like, they make it easy. They make it so it's hard to get wrong'cause I was nervous that I may have done it incorrectly and caused this pain. Um, and so, yeah, that is the, the story I guess, of me using the Neffy. Um. I did end up getting a steroid shot with Benadryl in it as well when I was at the urgent care. Uh, but I didn't have to use a second, uh, Neffy or EpiPen. Um, and it really took care of the symptoms like immediately. Like I, I didn't feel a hundred percent, but I felt like my symptoms that I was experiencing were. Uh, lump in my throat, like throat tightness. And then I had that sense of doom where I knew like immediately I need to use my epinephrine. Um, and so those were my symptoms. Usually I have lip swelling, I'll have hives on my chest, uh, hives on my face. I didn't have any. Symptoms. Um, so it just goes to show that anaphylaxis can look so many different ways. Um, but with the throat tightness, I was not wanting to mess around. Um, and so yeah, I, I had, I don't know how in depth you'd like for me to go, but I.

Amanda Whitehouse, PhD:

I think people wanna know.

Zoe Slaughter, Invisibly Allergic:

Okay, so, um, yeah, I was at the urgent care for three hours being monitored. Um, my oxygen levels, all of the usual protocol for, you know, an allergic reaction, anaphylaxis. Um, and then is where I, I'm like, I know people are probably judging me, but it's okay. I actually drove home. So, um, I was about three hours from my house when this happened, and originally I had planned to. Stay the night in Columbus, Ohio, which is where I was. And my husband was gonna drive up to me and meet me. Um, but I talked to the person at the nurse at Urgent Care and he was like, you're cleared to go, like, you're cleared to drive. You're good. Like if you, you know, you're hitting all the, know, uh, things that are required for me to release you. So you've been officially released. And he was like, if you wanna pull your car into the parking lot here and just. You can come and talk to me at any point. Um, feel free to do that. We close at eight, otherwise, you know, you're fine. And I was like hyped up from the um, adrenaline. So I was like, I think I can drive, but to tell you the truth, all I could experience was the pain in my face. Um, so I, as I was driving, I felt aware, you know, I had a plan. If I started feeling sleepy at all, I would call my husband. He was gonna come and meet me wherever I was. Um, but I felt fine besides that. My nose just felt like it was literally. Flaming.

Amanda Whitehouse, PhD:

Helps.

Zoe Slaughter, Invisibly Allergic:

and only in that nostril, um, my eye kind of over time started feeling worse and worse. So I put it in this nostril and this eye only started feeling like, um, just hot. Like I felt like I could put an ice pack on my face and it would feel really good. Um. But when I looked at myself in the mirror, there was no visual symptoms of what I was experiencing internally. Um, so it was kind of confusing. I kept checking myself out in my rear view mirror, like, am I looking like really red? You know, just anything inflamed, nothing. I looked completely normal, um, but inside of my face. Felt so tender my eye, I started feeling like I needed to close it at times just to give it a rest. Honestly, like I, I couldn't figure out what was symptomatically happening from having used the nephi, but eventually I put, um, a tissue up my nose and I drove the three hours with a tissue up my nose, and it felt a lot better than without the tissue pretty much preventing any breathing through the nostril.

Amanda Whitehouse, PhD:

I was gonna say, I think that would make it worse, but it was movement through your,

Zoe Slaughter, Invisibly Allergic:

it was like the air hitting the skin was causing it to feel worse.

Amanda Whitehouse, PhD:

yeah.

Zoe Slaughter, Invisibly Allergic:

and that sensation lasted, I timed it, it was about six hours that I felt like my nose was on fire. Like I'd gotten a jalapeno or a habanero or something, you know, up my nose. Um, and then it still burned for at least 24 hours after, but it was manageable where I could sleep. But I did feel like I can feel my nose is. In there something is wrong. Um. As time went on, I actually had an allergist appointment coming up. Um, and so I went in, I had them look at my nose. Um, they said it was really raw, it was very aggravated. Um, and it was only in that nostril. So all signs point to, you know, it's from whatever the nephi hitting that tissue is. Um, but I wouldn't say that I wouldn't do it again. In fact, I took a walk earlier today and I brought the Neffy with me as my only. Epinephrine because I, I like that it's easier with the temperature control. I don't have to bring like my cooling case yeah, I, I don't feel afraid to use it, but I do. I remember when I hit the pump on the bottom, it was much more difficult to push than I expected. Um, I had to. Use both hands in order to, to do it. So that was one surprise. And then the burning and the, the lasting, um. Issues just residual. They, they increasingly got better. Um, and I don't know if this is going to be the case for everyone. I don't think it would be. Um, but I did, uh, two months out I was still having a lot of discomfort in my nostril. Um, and so I actually had to be put on a nasal antibiotic. Um, and so I have finished the rounds of that and I feel. Almost a hundred percent. I feel like 99.9% back to normal.

Amanda Whitehouse, PhD:

Yeah.

Zoe Slaughter, Invisibly Allergic:

Yeah. And I do wonder, um, you know, like I said, my allergist didn't know that that was a symptom, specifically the burning. They knew that what it says, that side effects are on the side of the Neffy, but that's all they, they knew. So I'm interested to see is more people have to use it, um, if this is their experience. But one other person I know has used it, and this was also their experience, although they didn't go on an antibiotic, it eventually resolved on its own.

Amanda Whitehouse, PhD:

But it lasted. It lasted a long time for them as well.

Zoe Slaughter, Invisibly Allergic:

it lasted weeks. Yeah.

Amanda Whitehouse, PhD:

You did everything right. You didn't question the reaction. You used your epinephrine, you sought medical care. You were cleared. I assume you had a second one for the drive, in case you needed another one. So there is no judgment on, on any of this. I think it's just everyone's, experience may vary, right? And so, it's interesting to hear how, how long this. This went on for you.

Zoe Slaughter, Invisibly Allergic:

I remember when I was leaving the urgent care, I was like, I feel. Fine in terms of like if I need to use another either of the Neffy, which I was nervous because it does say to use it in the same nostril if you have to use the second.

Amanda Whitehouse, PhD:

Yes.

Zoe Slaughter, Invisibly Allergic:

And I was like, I'll do it. But like am kind of like, what's this gonna do to my nose? You know? That is something that, you know, is worth just knowing, um, that it is going to potentially really burn and you might not want, you might have more hesitancy to use it a second one, um, because it does say in the instructions to use it in the same. Nostril. So I had those, um, I did talk to the urgent care like, um, nurse, and I was saying to him, you know, if I feel like I need to use the second one, I, I might use my AuviQ, um, just because of the burning. But it's not like the Neffy didn't work because it absolutely did its job. Um, but I had. Never seen any type of side effect around the burning. And I was really excited because I don't love needles. Um, I especially don't like, you know, I, I think because I am a food allergy child turned adult, the epinephrine is intimidating to me because of being told, like it can go through three layers of ski gear.

Amanda Whitehouse, PhD:

Right.

Zoe Slaughter, Invisibly Allergic:

well, what if I'm in shorts? I always, in my mind, still even in my thirties, like goes to those places where, um, you know, I, I've had to kind of. Remind myself like it's okay. And also it's changed over the years. Things have evolved. Um, but I was really excited about the Neffy for that reason because I do give myself a weekly injection at home, um, for my autoimmune arthritis. So it's not like I'm against giving myself a needle injection, you know, at all. Um, but I like having. The alternative to a needle if I feel like I need it in that moment. So

Amanda Whitehouse, PhD:

Yeah.

Zoe Slaughter, Invisibly Allergic:

carry the Neff, but um, I, I worry about like, what, what is this doing in there? I would love to hear, you know, what is happening, um, inside of my, our noses And is it anything long term we should know about? Is it common to have to go on an, you know, antibiotic afterwards? Um, especially for children, you know, I was so excited to promote it to my friends who have

Amanda Whitehouse, PhD:

Mm-hmm.

Zoe Slaughter, Invisibly Allergic:

and now I'm like, you know, I get it if you would like it, but don't. know, my advice is not to break the bank to get it. If you can afford your AVI queue and your EpiPens and the Neffy is going to cost a lot out of pocket or something,

Amanda Whitehouse, PhD:

Mm-hmm.

Zoe Slaughter, Invisibly Allergic:

you know, I, I would hate for someone to, to spend, you know, out of pocket 700 plus dollars or something, and

Amanda Whitehouse, PhD:

Right.

Zoe Slaughter, Invisibly Allergic:

discover that it actually causes this like, severe burning. Whereas the EpiPen, it's quick and it, there's really no after effects.

Amanda Whitehouse, PhD:

Yeah. I'm curious was so long of an aftermath worse for you than just using a needle?

Zoe Slaughter, Invisibly Allergic:

Yeah, because definitely like, you know, with an injection you will have some tenderness, you will have maybe cramping, some burning, you know, there's all different side effects. And I think, um, personally they've looked really different. For me, sometimes I like, I didn't really feel it, and then other times it's like, whoa. It's like a steroid shot feeling where it's like a cramping. I never would've expected two months later that I'm still dealing with my nose having issues. So really beyond a week or something, I've never experienced, you know, still having any issues at the site of an injection. Yeah.

Amanda Whitehouse, PhD:

and it also sounds like then, a reminder for two months plus of, I had a reaction, I had a scary reaction. I mean, obviously you were okay, you did everything right, but we kind of wanna move on, right? Like you, you wanna get back to normal and you don't feel normal.

Zoe Slaughter, Invisibly Allergic:

Yeah, absolutely. It was a reminder and that made me think for my friends with kids or just recommending it for children, um, you know, it could be traumatic. Um, and I do think it's just something to have conversations around, like, you know, if, if you can warn them ahead of time that there's going to be these symptoms, maybe that would help them, you know, through it. Um, but for me, I was surprised by them and it was. Just an abrupt, like, I never would've guessed that it had that type of a reaction and response, um, from just using one, you know, Nephi?

Amanda Whitehouse, PhD:

Right, right. Most. Important is what you already said. And this is what I think people's biggest fear is. Is it going to work? Right? It resolved your symptoms right away. Like you, you. Could feel that it was effective first and foremost, but cost, like you said, insurance storage, where am I going and what's the temperature going to be? It sounds like there's a lot of factors that can help people make an informed decision of what they wanna carry, where and what, and it might be a combination.

Zoe Slaughter, Invisibly Allergic:

Mm-hmm. Yeah, absolutely. I know for me, once I got my Neffy, I, like I said, I still carried my AuviQ mainly because I was like, this is new to me, and so I don't wanna only have nefi with me and then suddenly. No one knows how to use it and I can't figure out how to use it or you know, even though I read the instructions, um, they don't come with like a tester, you know how some of

Amanda Whitehouse, PhD:

Yes.

Zoe Slaughter, Invisibly Allergic:

Q has a trainer. Um, there's nothing like that with the nephew. So I felt a little apprehensive. And so I did carry, and I still am carrying two Avi q and two nephew with me. Um, I have as an adult, um, gone into anaphylaxis and had to have three epinephrine used on me. And so, um, and I had oral. Um, antihistamines and steroids given to me when that happened. And so they told me, you know, always carry four. So ever since that happened when I was 23, um, I've always carried four epinephrine, so I had plenty. But, um, you know, I, like now I'm kind of like, okay, I like having the option of either or in that moment for whatever my needs are. And, um. Yeah, I felt like in that moment I chose Nephi. Um, I would've given myself a second if I needed to, but there is, there was definitely more pause than the, the first time that I used it with the first one.

Amanda Whitehouse, PhD:

Well, and you make a good point. I think it's exciting that we're starting to have more options, but I think we're finally just getting to the point where everyone or most people know what an EpiPen is and kind of have an idea of how to use it. But if you had that in your pocket in some bystander needed to help you, they might it, it looks like Narcan, right? So they might not think to give that to you or how to do it, like you said. That's what I love about the AuviQ. Like it says right on it, just take this off and then it tells you what to do. Anybody can do it.

Zoe Slaughter, Invisibly Allergic:

Yes, absolutely. And I did have, because of the Neffy, I told my workplace, which is peanut free, um, I let them know, you know, I got this new, epinephrine that is not an autoinjector. Um, and it's. You know, the first of its kind, it's a nasal spray. And so I printed the instructions. I have those at my desk. Um, because I didn't want people to open my purse if I'm having a reaction and think, where's her Epi Pen?

Amanda Whitehouse, PhD:

Yeah.

Zoe Slaughter, Invisibly Allergic:

And I, I also, I've seen some, uh, websites updating their like. You know, different comparing different types of epinephrine to include nephi, but it's gonna take some time for that to across the board be included. I think, and that's something I wanna put on my website as well, is like a comparison. And also including the coupons that go with each, because there are. Typically coupons that you can use if you have insurance. Um, and so yeah, I like to keep people informed about like, what's cost effective, weigh all the options, what is most cost effective for you, you know, what are you, um, worried about or, you know, kind of trying to get out of the epinephrine, where do you take it most of the time? And then make your decision.

Amanda Whitehouse, PhD:

I wanna say, just before I forget, they don't come with a trainer like the other ones do, but you can, if you go on the website, you can search and request one and they will send you one. But it doesn't feel, I, I have one I, I'll show you. And it doesn't, it's nothing like what you described, like how you had to push. It's so there's no resistance whatsoever. Um. So, but, but just to have it familiar and in your hands, I feel like is helpful. So people who are listening, you can get one if you want it. Well, thank you for sharing that. I do. I think it's important for people to know and they can make an informed decision. Choices are good

Zoe Slaughter, Invisibly Allergic:

yeah. Yeah, absolutely.

Amanda Whitehouse, PhD:

One of the things that I was wondering if you wanted to talk about, you talk about this on your website, medications and pricing and, we need to have this medication.

Zoe Slaughter, Invisibly Allergic:

I tend to first talk to people like friends, family, who I'm comfortable with, and really anyone who asks me, you know, to elaborate on this, um, to talk about like, the equity in the healthcare space in the United States. So I personally am for universal healthcare. Um, so I, I love the idea of advocating for a future where that is a possibility. Um, right now it's. So for-profit it can be really, um, it's depressing. I mean, I've heard stories of people sharing epinephrine, you know, two packs between multiple families and switching between the families so that they have it for as long as amount of time as they can get it. But, you know, if you're uninsured, it's really hard to get epinephrine. And, um, I talked to a family who did have. Um, insurance. It was last year, but their daughter was navigating having new allergies. Come on. She was 16 and she had used eight epinephrine in a month. and so it just goes to show that like, just because you have access to, a yearly pack, if you're having to use it, you have to, you know, get another pack of it.

Amanda Whitehouse, PhD:

Right immediately.

Zoe Slaughter, Invisibly Allergic:

Yeah, immediately. And it's expensive. And I've, I've had to educate friends who have kids with food allergies to not split up their packs to put, you know, one at the, camp that their kid's going to, and then one at the house. I'm like, you know, you, you really, it might take extra effort, but you wanna keep'em together in case there's a misfire in case, they need a second one. You know? So, um, I think it's not talked about enough and the reality is. There's a lot of advancements that are happening, but there's also a lack of just getting people what they need. The basic foundation is like, if you have an allergy, you deserve to have epinephrine. And so that's my focus primarily. You know, I get excited about sublingual and nephi and you know, different things, but um, I also. Remind myself of the perspective. You know, I'm thinking there's so many families who don't have access to just the absolute basics of even seeing an allergist to find out what their allergies are. So, um, yeah, that's, that's kind of my take. I, um, I do write pretty openly, like on my blog or at least I try to, of just being transparent and trying to be as unbiased as I can. But just showing the facts and saying, you know, this is unfortunately the reality of the majority of people with. Life-threatening food allergies is they might, they might not carry an EpiPen and it's, they would like to,

Amanda Whitehouse, PhD:

Right. I've been learning so much about legal efforts I'm in New York state and have, some great people who have been fighting for it have passed, an EpiPen price cap Act here. I don't know the status of all the other states, If nothing else, you can reach out to your legislators and look at what's going on in your state and speak up There should be no kid walking around or adult who has allergies and cannot afford to be carrying some form of epinephrine with them.

Zoe Slaughter, Invisibly Allergic:

Yes. Focusing on what we can do and policy has been really, um, important to me and my mental health, honestly, because it does give me an outlet that I can focus on and think I am, you know, trying to be a part of the change that I wanna see. So yeah, check and see if your state isn't doing it. My state of Kentucky is not. Um, so, you know, talking to your council people, your, you know, representatives and saying, you know, this is a focus and that's what I'm doing in my state of Kentucky. And you know, there's only so much that, you know, we can do. But, um, I did get. Through the FARE website. Last year I applied for, uh, food Allergy Awareness Week in Kentucky, and it did get approved. So, um, we had a formal, you know, in the month of May, um, the 11th of May, through the 17th, it was Food Allergy Awareness Week, and it shows our house representatives and senators like. This is a focus, um, that your constituents want to be focused on. And so now I'm hopeful that through these small, you know, steps that maybe they will take it more seriously when I ask them to pass these types of bills.

Amanda Whitehouse, PhD:

It sounds like you're also doing this in your workplace, it sounds like you have communicated really well and helped to create awareness and accommodation at work.

Zoe Slaughter, Invisibly Allergic:

It's been a journey. Um, I started working like I was 18 in 2008, so I started working in a work environment when I was in 2008. And back then, um, I asked for accommodations around my peanut allergy and there was nothing. Um, it was like, you can talk to people about it if you want to. Like, that was the accommodation.

Amanda Whitehouse, PhD:

It's all on you. In other words.

Zoe Slaughter, Invisibly Allergic:

Yeah. And I was like, I already have, you know, like, what, what am I allowed to ask them? And they were like, nothing, you know? And so I was like, okay. Um, and so as I've gotten older, more policy has changed. You know, now it's covered under the ADA. Um, and so it's come a long way and thankfully I've been able to work with my workplace employers. Um, and so the last four employers I've had. We're peanut free, uh, buildings. One of them was like a two floor, you know, 300 employee, um, office. And so it's possible, I worked with the HR department and they did everything on my behalf, but they would run things past me first and ask my advice of, you know, what my preferences were. And then they would send out mass emails, they would put signage up around the building. They swapped out the snacks from our vending machine company, which was super easy. Um, the vending machine. You know, place was like, we could ask this all the time, like, if you want anything swapped out, like it's easy to do. So it just helped me become aware of what possibilities were even out there. Um, and so, yeah, now I work at a, a hybrid employer. It's in my, you know, city and I go in three days a week and it's a totally peanut free building. Um, there's signage up, they send out emails every so often reminding people, it's just a part of the conversation, but it's never a part of it in a way where it feels like. I'm uncomfortable. Um, and so it's been really great to see. Um, I, as a kid, I always thought I would be a teacher and I didn't pursue teaching because I was like, peanuts are in schools and I had so many issues in schools, you know, 5 0 4 plans. I predate them. So, um, it was like food allergies weren't included, so, um, that was a tough environment for me. But now I'm like, well, if I ever wanna try a second career, like maybe I'll become a teacher because there's peanut free schools now, you know, nut free schools. And so I'm excited to see where the future goes. But, um, just transparency, I, I talk about this on my side and on my social media and anyone's. Able to reach out to me over my contact form if they want more information around it. But, um, I've just talked to my colleges, my employers, um, transparently, and that way I know if they're not willing to, you know, make it work. I'm not putting in all this effort to just find out that I'm gonna have to quit, you know, or something like that. So that's been my strategy is just being transparent around it. Um, I know everyone. Feels differently if they wanna blend in and, you know, not have the attention on them, which I totally get to. Um, so it's just doing what, what your preferences are really.

Amanda Whitehouse, PhD:

I love hearing that and I think that's encouraging for people, you know, both who are already adults and parents like me, wondering what's life gonna be like someday for my kiddo, um, but you have to ask, right? You have to communicate your needs,

Zoe Slaughter, Invisibly Allergic:

Yeah. And everyone's different. Like I'm airborne and cross contact, but if someone's comfortable being in those environments, they may not wanna share that, you know,

Amanda Whitehouse, PhD:

right?

Zoe Slaughter, Invisibly Allergic:

understandable. So, um, that's, that's how I've navigated it. But I definitely encourage everyone just to do what, what feels right to them, because. It can look so many different ways.

Amanda Whitehouse, PhD:

Absolutely. Well thank you for sharing all of that.'cause Yeah, there's a lot of parts of your story that look different for you and I think will be helpful for people to hear and to read

Zoe Slaughter, Invisibly Allergic:

thank you so much. I'm so excited to, to get it out into the world. I've, I've written it, hoping that it will stay current for at least like five years, so,

Amanda Whitehouse, PhD:

Well, it's hard because the allergy world is changing so quickly, but your experiences stand right regardless of what changes medically, okay.

Zoe Slaughter, Invisibly Allergic:

thank you, Amanda. I really appreciate you and appreciate you highlighting me and my story, and you're just such a natural at podcasting. Like I'm so impressed by you,

Amanda Whitehouse, PhD:

Thank you very much. It was great to talk.

Zoe Slaughter, Invisibly Allergic:

Yeah, you too.

Zoe's story reminds us how important it is to center lived experiences. When we talk about food allergies, when we make treatment choices, and when we create policies. Here are three steps you can take after today's episode Number one. Follow Zoe if you don't already. Her book will be available soon. I have read it. It was very touching. I'll be honest. I cried at times with her and her perspective is really powerful to hear. You can find her online and on all platforms at Invisibly Allergic. Number two. Please know that Zoe and I are not discouraging anyone from using any specific epinephrine device or combination of devices that is right for them. Our goal is to make sure people, again know real life experiences of other people in our community so that they can make the best choice for themselves with the information that they have at hand, We also think it's important if anyone does experience similar issues to what Zoe did after using their Neffy or any medication to report them directly so that they can be tracked you can report any medication side effects or difficulties to the FDA at www.fda.gov/medwatch, M-E-D-W-A, T-C-H, or by calling one 800 FDA 1 0 8 8 and you can reach out directly to Neffy to explain your experiences at 1 8 7 7 6 9 6 3 3 3 9. I did reach out to Neffy and invited a representative to join me for an episode of the podcast, they declined, but did clarify that in their 1600 administrations of Neffy during their clinical trials, prolonged nasal symptoms like those described by Zoe were not reported. The invitation stands if anyone from Neffy would like to discuss this more, and again, the bottom line is. Carry and don't hesitate to use whatever epinephrine device or combination of devices feels right for you. The most important thing is getting your epinephrine when you need it. As always, this podcast is not medical advice. It's just information for you to take into account when you're having these discussions with your own providers. Number three, if you know someone else who's in the midst of making that decision, considering which medications to use, what might work for them to carry, this would be a great episode to share with them, to help them make a more informed decision. Thank you for being here with us today. If you're enjoying the show, I would greatly appreciate a rating or a review to help to spread the show to a bigger audience. the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.

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Amanda Whitehouse, Ph.D.

Host
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Zoë Slaughter

Guest